Monday, January 20, 2014

Just a spoonful of Sugar helps the medicine go down...

My grandmother had a wonderful way with words. Specifically, she had a way of using her words that made you feel like the sweetest, smartest, most talented person on earth. No matter what I presented to her - be it news from my workplace, updates on my (then) dating life, or samples from a new cookie recipe, she thought it was the best, most interesting thing she'd ever heard (or tasted). And she was sincere about it, too. She taught me the value of simply being nice. I wish I had an easier time of following in her footsteps!

Grandma Gretter passed on a few years ago, but there is someone else who very successfully follows in her footsteps, and that is Johnny's grandmother, affectionately known as "Sugar". Sugar is just like my grandma, always encouraging, engaging, and as supportive and loving as can be. When I first joined the Gorman family, that loving, yet overwhelming large herd of people, she was the beacon of light for this in-law-to-be. If I needed a break from the chaos, I could count on Sugar. If I wanted some congenial, yet interesting conversation, I went to Sugar. She was and is one of the best parts of becoming a Gorman. And I love her dearly.

Having been diagnosed with lupus almost from the day I joined the Gorman family, Sugar and I have had the opportunity to connect on yet another front: life with a chronic illness. Hers is Rheumatoid Arthritis. Mine, of course, is lupus. We've compared medicines, pains, and immobility. We've talked about our current dosage of prednisone, how plaquenil is treating us, and how supple the joints are feeling on any given day. No matter how I'm feeling, I always know that Sugar will understand.

So on Thanksgiving eve, after fatigue, joint pain and swelling had come and gone in waves all day long, I found myself in conversation with Sugar. (Truth was I wasn't very conversational at all, given my condition, but I was mustering up the energy to talk to one of my favorite ladies.) She innocently asked me how I'd been feeling, and immediately tears started to well up. Here was my partner in pain, my go-to medication buddy, asking me the honest question that I'd been trying not to admit all day long. And so I told her. The truth. I told her that, honestly, I hadn't been feeling that well for quite some time. I mentioned how I'd been forced to increase my medication (which is always a bummer), and that I was still fighting a lot of fatigue. And then I added, which was difficult to admit, that because I'd been feeling so crummy, we'd hired another babysitter during the week to make sure every single day was covered for my naps. (It's just hard to be the only in the family who can't "do it" alone.) As I was fighting back tears, with thoughts of failure going through my head, Sugar came through. Just like she always does. She turned to me, and with conviction, said, "Well, of course you need a babysitter. Your kids are young, and they're at an age where they still need you constantly. You can't do that all by yourself. No one should. Of course you have a babysitter. And of course you take a nap. That's the smartest thing you can do."

And just like that, Sugar made me feel like the most normal, practical, well-adjusted mom in the world. Like I was the smart one, and the one with the advantage. Instantly, my feelings of doubt, uneasiness, and frustration were gone. My pain and fatigue still lingered, but I felt a burden lifted. The burden of trying to keep a smile on my face, when I was crumbling inside. Of trying to act strong and resilient, when all I felt was weak and vulnerable. Of denying the fact that making good decisions for my health, when no one else around me had to make them, was a hard thing to do. I thanked her for her kind words, but I'm sure she had no idea the impact she'd had during our short exchange. She didn't say much, but she'd said enough.

A few minutes later, we all made our way to dinner. Shortly after dinner, and just as soon as it wasn't obvious, I snuck upstairs to the spare bedroom where the girls would be sleeping that night. I closed the door, curled up under the covers, and went to sleep for almost two hours. I did so because Sugar reminded me that taking care of myself was smart. It was logical, and it was the only thing that could be done. I took a nap, in the midst of our Thanksgiving celebration, because, in essence, Sugar told me I could.

8 comments:

Kelli
said...

Hi Sara,I love your blog first of all, really helps me. I was diagnosed with fibromyalgia almost 2 years ago and Lupus 1year ago. This latest post of yours really helped because I have a lot of guilt because I can't do or be who I used to be. I have a lot of stress in my life and I know it's not good. I'm having severe hair issues, due to everything I think and also hormonal. What suggestions can you give me? On hair particularly since it's at its worst :( vitamins? Which ones? Any help would be appreciated! Thank you, Kelli

Thanks for the wonderful post. I had a very similar expierence this past Sunday. I was rushing around the house, chasing our two kids, cleaning, and trying to prep salad and biscuits for dinner. My husband told me to lay down, covered me with a blanket and said he would wake me up soon. He ordered the biscuits from a bakery and watched the kids so I could prep the salad. Sometimes you just need to be selfish and take that nap. :-)

Kelli - Thanks so much for your kind words! So glad you've been following along. I've been at the chronic thing for 13 years now, and I STILL have to do a check and balance on guilt once in awhile. So hard to ignore those feelings! Re: hair - sorry to hear you're having a tough time. I've written so much on my blog re: hair loss, including tips that I've used, as well as others have offered up, I'd try two posts - "Lupus Hair loss" and "lupus Lockdown". (just do a search on my blog.) If you've read those, as well as the other "hair loss" posts, but you're still looking for more specifics, shoot me an email. I know how devastating and frustrating hair loss can be! sara@despitelupus.com

Randi - That's a gem of a husband you have! So glad you took a few moments for yourself. It really doesn't take a lot...just a little willingness to say enough is enough, right? Thanks so much for commenting.

one of my favorite posts ever. sugar is so special - i LOVE she gave you just the love and support you needed. i am SO sorry that thanksgiving was such a hard time - i so wish i had been there. love you always! xoxo

ugh...foot pain. Not sure I have anything to offer, but I know the feeling. I would definitely let the doctor know how much they hurt...and see if they have any recommendations. Could be a sign of something else that can be controlled via therapy, or even medication. I know that when the nodules on the bottoms of my feet hurt (different than what you're describing, but still painful), it hurts to take even a few steps. Tennis shoes are the most comfortable for sure - and I like to soak my feet in warm water. My girls often volunteer to give my feet a "spa day" when they're hurting. It feels so good! But do check with the doctor on all of the above - just to make sure.

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.